Flaminia Macchia has over 30 years of experience working in an international environment, with a focus on advancing equity. Her main area of interest is public health, with particular expertise in rare diseases. She has worked in both the private and non-profit sectors, including over a decade as the European and international Public Affairs Director of a European organization focused on rare diseases. In this role, she worked to promote a more rare disease-friendly legislative and regulatory environment in Europe. More recently, until December 2022, Macchia led Rare Diseases International (RDI), the global alliance of persons living with a rare disease and their families around the world. Throughout her career, she has been motivated by a strong commitment to equality for all.
What inspired you to work in the international association sector? Would you recommend this career to others?
In my mind, there was no question about working in an international environment as I strongly believe in the value of bringing different perspectives and cultures together. I was born into a family of « travelers » and « international adventurers ». I always knew that I wouldn’t fit within a purely national environment, no matter what it might be. The associative sector has always appealed to me as I knew very early in life that I needed work that gives meaning to my life and was going towards a humanitarian cause.
Bringing together my attraction to the international dimension, associations, and equity as the highest human value, my path naturally led me towards rare diseases as one of the many areas of high inequality with a profound impact on the lives of millions of people around the world.
I would certainly recommend this career to people who want to collaborate toward a better world and towards more equitable and inclusive societies. Giving a voice to civil society in addition to decision-makers and politicians also feels like the right thing to do. However, I wouldn’t recommend this career to impatient individuals as the change you want to see and work so hard for might not come for years, or even decades. One also has to be able to cope with some level of frustration, which might be exacerbated when you are a person with a profound rejection of unfairness.
How does your association #EmbraceEquity? Does giving a voice and a space to diverse groups make for better results? What are the challenges you encounter? Did you solve them?
Rare Diseases International (RDI) is the global alliance of Persons Living with a Rare Disease (PLWRD) and their families. As such, RDI aims to promote the delivery of high-quality health and social care to everyone around the world, across all countries, and all rare diseases. RDI has made it clear that this goal can only be achieved through social justice and equity. Equity is the hallmark of social justice as it focuses on reducing social, technological, and economic inequalities and facilitates equal opportunities to attain the greatest level of health and well-being, leaving no one behind.
The vulnerable population of persons with a rare disease (as patients themselves or as family members) cumulates several layers of vulnerability, physical, social, economic, and technological, which must be addressed with holistic and specific policy and action. This means that all PLWRD, wherever they live in the world, should have the same opportunity for accurate and timely diagnosis and access to health and social care. This can be achieved by « doing more for those who have less, » reaching the furthest behind first. The vulnerable population of persons with a rare disease (as patients themselves or as family members) cumulates several layers of vulnerability, physical, social, economic, and technological, which must be addressed with holistic and specific policy and action.
RDI led the international campaign towards the first-ever United Nations General Assembly Resolution on PLWRD and their families. This resolution recognizes that PLWRD may require specific action and support to enjoy equal access to benefits and services in education, employment, and health, and to promote their full, equal, and meaningful participation in society. The UN resolution also recognizes the fundamental importance of equity, social justice, and social protection mechanisms to ensure universal and equitable access to quality health and social services without financial hardship for PLWRD and their families. The campaign was successful precisely because « everyone was singing with one voice » all over the world and was coordinated globally and nationally with diverse groups. Overall consistency and coordination were ensured by RDI for better efficacy. This is one example of very successful international, global, regional, and national advocacy. The key challenges included making rare diseases relevant at the United Nations, raising the understanding that living with a rare disease does not only affect the life of the patients but impacts their whole family and social networks, and making decision-makers and politicians care about rare diseases beyond Europe and the US.
With patient groups from Africa, Asia, Europe, Latin America, the US, Canada, Australia, New Zealand, and others, and with the coordination and leadership from RDI, we were able as a community to achieve this major step for the global rare disease community.
How important are diversity, equity, and inclusion for the future success of associations? What initiatives, projects, and ideas can you share that help others understand the real value of DEI?
In my opinion, there is no future, nowhere and for no one, without improvements in terms of equity for all. We have all witnessed how pre-existing inequalities in national societies and in the world have been exacerbated by the COVID pandemic, in terms of health, education, economic circumstances, gender-related issues, children’s rights, etc. No associative work can, in the future, disregard or minimize the overarching goal represented by equity. One important point is to make sure that, while fighting for the cause of equity externally, associations and their leaders respect equity internally with their colleagues and volunteers.
I strongly believe that regional and international associations must ensure diversity within their staff, equity in treating staff members and volunteers, and ensure freedom of thought, as well as inclusion of different opinions and ideas, without allowing the overbearing attitude that many leaders might have internally. This tendency is exacerbated in a sector with no money and no « power, » in the traditional way of understanding what power means and represents.
Also, international associations should not be dominated by a Westernized perspective if they want to be truly global and genuinely represent the world’s differences and nuances. This is particularly challenging for a generation of leaders who tend to be very Euro-centric or US-centric in their vision of the world.
I would strongly recommend an « equity assessment » to be performed as a way to recognize the role and credibility of associations that claim to work for equity but don’t apply its principles internally.